Fear of the Unknown
It takes a bit of work, and a bit of spiritual enlightenment, to get comfy with the unknown. It’s easy to take our health for granted and if there is no reason to consider what it might be like if your body suddenly stopped performing necessary processes, then why would you ever dwell on such a thing. It comes as quite a shock then when the off switch seems to have been flicked and you can almost hear the whir of your body shutting down. I remember those early days, it’s like having stepped into quick sand. I was dragging myself through the things I needed to do, all the time finding it harder and harder to move my limbs. I kept thinking if I just rest up this weekend, or I focus on eating healthier, or if I make a doctor’s appointment and get a few checks done…. but it didn’t get better, in fact it got worse. No matter how much time I spent in bed, I just felt depleted. I was having dizzy spells and forgetting words. It was hard to focus and remember things, not long term things but short term. My stomach was unhappy and my whole body was one giant ache… it’s more than a tired muscle ache, it feels like your bones are aching. I felt like I was coming down with flu or a fever constantly and my eyes didn’t seem to be working properly, things seemed a bit blurred and I often wanted to just close them or stay in the dark. Sometimes, for no apparent reason, it felt like my heart was going to leap out of my chest, then other times I felt like I couldn’t breathe at all.
The doctor sent me for iron injections. That was the start of a procession of appointments and treatments to try and deal with one or other symptom, or find the underlying cause…. tests for glandular fever, thyroid, celiac, cardio issues, a Chinese doctor, acupuncture, a naturopath, more blood tests, an MRI… being told I had Candida, being told I hadn’t dealt with failed fertility treatment and a failed marriage, being asked if I were bulimic. An appointment at the Alfred hospital for something…. I can remember walking down corridors for about 15 minutes and feeling like I was in the bowels of the hospital and must have taken a wrong turn. The doctor I saw was in the artificial limbs area and I remember there were all sorts of false arms and legs lying about…. but whatever it was that he did, he was the first to say the words ‘Chronic Fatigue Syndrome’. I had no idea what it was. He said I’d have to wait 6 months (another 4 months of this!) before it would be known for sure.
Once it was ‘known for sure’ I felt like I didn’t know anything for sure. I had stopped work to get things sorted and had begun sessions with a CFS Specialist. The tests started again. I was living over an hour out of Melbourne and coming in for appointments seemed like making a trip to the moon and back…. it was so exhausting. Often on the trip home in the car I would sob uncontrollably, squirming in my seat, not able to get a moments rest or comfort from the pains. I felt like a little child who had been forced to stay awake for 2 days straight and was now delirious with sleepiness. In fact it felt a lot like the end of a 12 hour shift, like I used to do as a computer operator in London in my early twenties, except it felt like that all the time and I was now 38 years old.
Then it got worse. The bed ridden stage arrived. There are 5 or 6 months of my life that I don’t recall, other than always being in bed and always being out to it…. deep, deep sleeps, having to grab the edge of the bed and drag myself over in small movements if I wanted to turn over (this could take up to 5 minutes and often I gave up mid-way through). Sometimes sensing that my partner was there in the room or in the bed, sometimes not aware of his coming and going for a few days at a time. Trying to get into a routine, at least be up in the evening for a few hours. I remember smelly hair on the pillow, mine, because I couldn’t lift my arms in the shower to wash it. It took every ounce of energy to get to the bathroom and just stand in the shower. I couldn’t stand the sun light or the noise of the television. Each trip to the city made me so sick; pollution seemed to get to me, my senses were all over active. I remember calling my partner at work one day and crying to him over the phone… I was lying on the floor with my hands over my ears and totally terrified because I could hear the sound of electricity coming from the wall sockets…. I thought I had gone completely mad.
Most frightening of all was the depth of sleep. It was nothing like any sleep I had ever had. I would try to wake up, I was aware of trying but I could not get to the top of consciousness, if that makes any sense. It was like coming up out of unconsciousness, being aware of travelling up and thinking I would awake any moment but never getting there. There was an actual feeling in my stomach of moving upwards at speed, enough of a sensation to make me feel queasy. I knew I was trying to open my eyes and trying to move my arms and legs but nothing was happening. Sometimes I knew that I heard the dogs barking or a car coming down the gravel drive but still I could not move. There was a panic to this, like drowning or suffocating. I thought I might not be able to wake up one time; that perhaps there would come a time when I wouldn’t be able to get to the top, re-surface into the real world. That I would die in this bed with smelly hair and hairy armpits.
There was always the unknown. What tomorrow would bring. If I would get better or worse. What the next phase might be. If my partner would leave me. If my family believed me. If I would ever run again, or listen to music. There were the financial unknowns.
There were medical unknowns…. I read stories online about CFS/ME when I could. Some people had recovered, some relapsed again after 5 years and some had killed themselves.
I didn’t like the unknowns. I didn’t like that there were people lying down in the waiting room when I went to see the CFS Specialist. I wanted to shout at them to get up, have some pride. I wanted to tell them not to come here in their slippers for goodness sake. I didn’t like the bank ringing me to ask when I would be back at work, when I didn’t know the answer.
Even now, 8 years on, there are still unknowns relating to managing CFS and maintaining a life and a balance. Researchers keep finding out more about what might possibly cause CFS but not too much to read on how to cure it. And then there are the unknowns of menopause on top of a need to manage CFS on a daily/weekly basis. I’ve found that the unknowns can be good and bad; you know, there are things I have learnt or become that are a direct result of living this way, some good and some bad. One of the not so good things is that since the worst of the CFS I have found that I’ve lived one day at a time (which is good in a spiritual sense in many ways) but not so good financially and with a view to the future. I’ve been so focused on survival at the most basic level (the body functioning and allowing me to go out and work) that I have had no sense of a future. This year is the first time I’ve taken stock and tried to imagine what I want my future to be and how I will achieve it. It’s probably the flight or fight mode that you get stuck in when focused on survival…. there’s no longer term thinking going on (even though there is a real need to protect yourself and guard against the unknowns, especially if you are on your own like I am).
One way or another you must learn to make peace with the unknowns. You need to develop a good shoulder shrug and a flexible way of thinking. You still need to try and make plans, don’t lose sight of a future and don’t let go of your dreams…. but be open to them being achieved differently, or taking longer to get there. Give yourself time and space to heal, don’t beat yourself up, don’t try to over control and push things to happen in your recovery. I found sort of looking at it from the ‘outside’, detached and looking at me and my situation as if I were assessing another person was quite useful. A way to stop all the internal dialogue, judgement and worry.
Fear, I believe, is the hardest of all to deal with and lasts the longest. It starts off as fear of the unknown, then you go through the CFS and you know what it is, what it does and then it becomes fear of the known. Fear of regressing to the worst of the CFS again, fear of being bed ridden, fear of not being able to work, not being able to support yourself and pay the bills, fear of fatigue, fear of insomnia, fear of not being able to wake up. It takes a lot of effort and mindfulness to turn the residual fear into strength, to say ‘well I got through that, I went to the bottom of the barrel and I got back out again, and now I know myself so much better, I know that I can cope with anything’. That is in fact a positive!
And there are other positives too…. there are a number of good things that can come out of unknowns and uncertainty 🙂
˃ Learning firsthand how precious life is, especially your health… learning what is truly important and letting it shape the rest of your life going forward.
˃ Reaching out to spiritual teachings and finding simple concepts to believe in… being forced to go back to basics can be a clean slate on which to write your life differently. It can be a time to heal, not just from the illness but from anything that has been troubling you.
˃ Learning how to control your thoughts to cope with fear. Finding ways to trust in yourself, the energy around you and your true purpose.
˃ Living in the present, one day at a time. Letting go of the fight and struggle to make things what you think they ought to be and opting instead to just let them be what they are.
˃ Learning to practise mindfulness through meditation to deal with uncertainty. Figuring out that getting stuck thinking about what you cannot control is a waste of time and instead being able to tap into possibilities rather than fears.
˃ Knowing how to stay on an even keel… being able to invoke coping mechanisms and be flexible when
things take a different path than the one you had expected or hoped for.
˃ Understanding that your life does not get better by chance, it gets better by change. Knowing this can allow you to make peace with uncertainty and be open to change.
˃ Finding out how much friends and family truly care.
˃ Knowing you can survive a real challenge, becoming aware of your inner strength, courage and fortitude.
Have you struggled with the unknowns of Chronic Fatigue Syndrome? What were they for you and how have you coped with them? What advice would you give to others?